In healthcare, the investment in Information Technology (IT) to date has been based on this very hypothesis – better and more timely information delivery will lead to healthier patients and public. Unfortunately, the evidence has been slow to evolve supporting the relationship between IT investment and improved health outcomes. This is due to many factors, but one factor that has not received much attention is the selection and development of the most appropriate indicators of outcomes. The health industry has not developed a set of performance measurement tools or standards. For example, should we be looking at overall improvements such as the decrease in length of stay across many illness groups, or perhaps disease specific outcomes such as percentage of diabetes patients meeting a performance target (such as one health indicator staying within normal limits over a period of time)?

It is my belief that many of the positive results will indeed emerge over time. In addition, innovative work must be done to supply effective information systems for patients (a stakeholder group that has been overlooked from an Information Systems – IS –development perspective). Focusing on the chronically ill is an important strategy due to the impact that these patients have on the delivery system as well as the potential to provide overall health system improvements. It should be emphasized that all patients are not equally versed in the healthcare system – even within the group of chronically ill. Further, not all are technology enthusiasts. Therefore, performance measurement on the appropriate patient group using insightful and feasible metrics will be critical going forward.

The chronically ill

Research in a number of countries estimates that about 40% of the general population has a chronic condition (Shine, 2002; Hillestad et al., 2005; improvingchroniccare.org, 2007) and account for 70-80% of the healthcare spending. A chronic condition can be defined as a life-long illness or a disease that has long term implications. We use the term 3C (Consumers with Chronic Conditions) to describe this patient group that consumes a large percentage of healthcare services. Examples of such conditions are asthma, diabetes, heart disease, inflammatory bowel disease and all forms of cancer.

The 2002 Change Foundation Report, Consumers and Canadian Health Care, identifies consumerism as “one of the key drivers of demand” for health care services. However, “consumers are not a homogenous group; they take on many different roles and can change their behaviours according to the context they are in” (Tu and Hargraves, 2003). This is a critical point that may have been overlooked by many who have set out to evaluate the impact of patient-centric electronic tools. While every individual is a potential patient (or may have been a patient at certain time points through their life) the 3C demographic accounts for the vast majority of healthcare service consumption. Clearly, health status affects how consumers seek information and 3C are more likely to seek health information than non-3C.

Ultimately, there is significant potential for 3C to alleviate much strain on the system as well as improve health indicators. Further, certain 3C patients will be able to see benefits in ways that are currently not being envisioned. In order to illustrate the benefits of a patient access tool for 3C, the story below provides a “diary” of sorts from a fictitious patient that has been newly diagnosed with a chronic condition. This illustration is separated into two parts – the first scenario in today’s world and the second one is a healthcare system which contains an effective patient Portal support tool allowing access to a variety of information sources, including the patient’s own personal health record.

Part 1

Three Months in the Life of Crohn’s Disease patient around time of diagnosis

1) Experience symptoms

I have been experiencing cramping on a more regular basis. For some reason, it seems to follow eating by about an hour or two. Sometimes the pain is so bad that I have to stop what I am doing to hold my stomach to ease the pain. I have very few other symptoms.

2) Search for information

It’s been 2 weeks now of pain every day…and it does not seem to be getting better. On a couple of occasions I have felt very nauseous. I cannot avoid it any longer - it is now time to look into this more. I went to a couple of Internet search engine sites specializing in health – looked up the symptoms but really could not narrow it down to anything I could follow-up on. I finally phoned my GP and got an appointment for a week from Friday.

3) Disease diagnosed

My GP did a full physical and found little evidence of symptoms to follow-up on. When he measured my weight, I was shocked to find that I have lost 15 pounds since my last appointment 2 months ago. I was sent for a full GI series tests. My doctor’s office phoned a week later with my results and told me that I have Crohn’s Disease (he wanted me to come in for an appointment but I forced him to tell me over the phone). He did not have much to provide except that there is no known cause or cure but that people can lead healthy normal lives once the disease is managed effectively and in remission. I asked for next steps and I was told his secretary would phone with a referral to a specialist … a gastro something!

4) Disease learning

I went back to the Internet to search for information on Crohn’s Disease. I found a number of sites that explain it in varying details. I even found the Canadian Association for Crohn’s, but didn’t really find what I wanted. This may sound odd, but I am not really sure what it is I wanted to find out, but I just know that I didn’t find it – I was left wanting. Unfortunately, I had to go to my son’s hockey game and did not want to disappoint him by not attending … again – so I could only search for so long. I have an appointment with my new doctor in one month.

5) Health provider search

I met with my new gastroenterologist today and honestly, I have more questions now than before I went to see him. I went to his clinic and waited for 2 hours before I could see him for about 20 minutes. He reviewed my X-rays and confirmed my GP’s diagnosis of Crohn’s Disease. I tried to get out a lot of questions but I felt rushed and didn’t even get to ask the first question on my mind – what should I be eating? He put me on a new drug and scheduled an appointment for 3 months from now. I am still suffering from cramps and am not sure that these pills alone will help my pain – or continuing loss of weight.

6) Educating friends / family

It has been 4 weeks since my gastroenterologist’s appointment and all I can think about is my newly diagnosed illness. I cannot find out too much from websites other than that most patients experience a lot of pain and cramping with significant weight loss when the disease is flared up. Much of the research literature that I found discussed treatment options but none of them discuss the drug that I am on. Also, I don’t know how to get the flare-up to subside or alleviate the symptoms. A friend of my sister says that her cousin has had Crohn’s disease for about ten years and would be happy to talk to me. This sounds like a good idea but I don’t think I will call because I just don’t feel comfortable talking about cramping and diarrhea with a woman I don’t even know.   My family has been very supportive and my job has understood a lot of my absences over the last couple of months due to being sick and / or doctor’s appointments. However, I still feel there is so much I do not know in comparison to what I do – and I don’t know where to turn.

7) Finding support groups

I found through the Canadian association for Crohn’s disease that there will be a meeting of the group for information purposes; this meeting took place last night. It was very useful and I got to connect with a lot of people – I was surprised how much we all share the same symptoms. I also got a lot of great advice that I did not get from my doctor! I guess in fairness, these little tidbits are patient related and doctors wouldn’t really know how and what works to ease the symptoms.

8) Self discovery and reliance

It has been three months since my diagnosis and I just had my second appointment with my doctor. Some of my symptoms improved over this time, probably due to the drug that I was put on but also to a lot of lifestyle changes that I made to my eating habits and diet that I learned from some of my “new friends”. Although I know that I have a lot to learn, I have become much more accustomed to my indicators of my health. I have been sent for another series of tests and will have to re-schedule another appointment to get my results. Honestly, since I am feeling better, I am a little reluctant to have these barium tests as they seem to upset me almost as much as my Crohn’s.

9) Managing expectations

It has been one year and I have grown to accept my chronic condition. I realize that I will have to take charge of my health management. I had three bouts of bleeding in the last two months and the first time I saw the toilet bowl, I just freaked out – I thought I was going to bleed to death right there. My wife drove me to the Emergency Department and I was admitted almost immediately. As it turns out this is very common but no one told me this “even could” happen let alone that it is likely to occur over the course of my illness. Having repeated this scenario on 2 more occasions, I am desperate to learn more so that I could do anything to avoid these highly “panicked trips” to the Emerge. Whether I like it or not, I need to be more involved; I guess I have come a long way from the time where I put off the first trip to my GP because I didn’t want to know or confirm that anything was wrong!

Part 2

Crohn’s Disease patient with support of a Chronic Disease Management Portal at local health services provider (i.e., hospital, clinic) – referred to below simply as “Portal”

1) Experience symptoms

I have been experiencing cramping on a more regular basis with the pain being so severe that I have to stop whatever I was doing. I saw a story in the paper about a new patient website that supports patient learning, empowerment and talks about how to navigate the healthcare system. I decided to see what it had to offer. I "Google-ed" patient empowerment and was led to Portal. I have a lot of information that I printed out. I will look at this in more detail over the next few days.

2) Search for information

It’s been 3 days of increasing pain every day…and it does not seem to be getting better. I decided to sit down and review the information that I printed out from Portal. One neat option the site provides is a connection to people who have like symptoms. I never have seen anything like this – where all you need to do is describe your own experience. I found three people and sent them email.  I was also able to submit a question to “ask an expert” and could describe in detail my symptoms… and I did not feel embarrassed at all! It was so easy – they even have a pull-down window for varying degrees of diarrhea – with a full description - can you believe that!? I never thought you could describe diarrhea is so many ways! I can’t wait to see what response I get back!

3) Disease diagnosed

Just went back onto Portal and had two responses this morning – one from ask an Expert and one from a patient in Delaware. Both oddly enough needed more information and asked me directed questions. The patient from Delaware gave me some good advice about diet and roughage – especially when cramping is bad.  I will go grocery shopping today.   I logged on again later and the Expert, given more follow-up information, recommended that I contact my GP as soon as I can in order to get a full GI series work-up?! He stated that there was no way to be sure what I have or the seriousness without first doing a formal set of exams.  One thing for sure is that he felt this is serious and severe cramping to the degree that I am having should not be dismissed – it is probably a sign of something more significant than just a stomach virus, for example. I phoned my GP and with a little persuasion I was able to schedule an appointment this week – I told them that a doctor “friend” said it was urgent.   My GP did a full physical and when he measured my weight, I was shocked to find that I have lost 7 pounds in the last 3 weeks! I was sent for a full GI series tests. I phoned my doctor’s office a couple of days later and he told me that I have Crohn’s Disease (he wanted me to come in for an appointment but I forced him to tell me over the phone). He did not have much to provide except that there is no known cause or cure but that people can lead healthy normal lives once the disease is managed effectively and in remission. I asked for next steps and I was told his secretary would phone with a referral to a specialist … a gastro something!

4) Disease learning

I went back to Portal immediately after I got home and searched for information on Crohn’s Disease. I was able to drill down and find all sorts of facts. First, I found statistics on life expectancy and the impact that an inflammatory bowel disease can have – I must tell you that this little fact was just so re-assuring. Second, I got a list of all Gastroenterologists in my city near where I live, and which ones are taking new patients. I was able to link to their sites right from Portal and found out more about them and their education materials. Third, I could order a second opinion on my test results – I think this is a great feature that I will use down the road. Most importantly, I was able to join a chat room and my new contact from Delaware was there to help me get over the intros. I must say that there is something to that old saying “misery truly does love company”!   This may sound odd, but I when I started out I really was not sure what it was that I wanted to find out or even what I was looking for, but somehow Portal worked – must be because there are so many patients like me!

5) Health provider search

I met with my new gastroenterologist today and honestly, I really like her a lot. She was not in a rush, like my GP always seems to be and seemed to be very empathetic about my situation. She reviewed my X-rays and confirmed my GP’s diagnosis of Crohn’s Disease. I printed out a lot of my questions beforehand (with the help of Portal’s neat decision tool “help me ask”) and this allowed me to feel very prepared and not panicked as we went through the question and answer. In the past, I usually got sidetracked with my doctors and never seemed to get to the most important question – until I was back in my car and on the way home! After discussing many treatment options with a full consideration of potential side effects, we decided together to put me on a new drug. At my insisting, we scheduled an appointment for four weeks time, which is the minimum amount of time it should take to see some results. I want to stay on top of this! I told her that I had received a possible diet that I could follow – and she encouraged me to try different foods to see what I tolerate and what I do not as every body and every bowel is different. I feel very happy in just discussing it and getting her feedback!

6) Educating friends / family

I decided to take my family on a tour of Portal – my wife stated that she found out the secret to my new-found intelligence! Seriously, this has truly been extremely helpful in me getting over the whole newly-diagnosed process. As a patient, you have many more questions than answers and Portal has been there to help me not only with the answers, but to help frame the questions. This way I have confidence in my opinion before I go to see my doctor – as a result, I am not afraid to tell him what I think and what I want. Further, Portal has helped me describe my symptoms to my wife and my kids – something that I was hiding from them all because I thought it was my fault – something I did wrong to get this. Portal reassurance means improved confidence and better decision making. As my new doctor said, it’s about making me well – and not just about treating symptoms! Finally, I was able to provide my employer with much information about my illness so that they could appreciate what I am going through.   Another great option is that Portal helps translate much of the research literature that previously I feel is very complicated and uses language that I just do not understand. I am even going to the linked research sites now to learn more about recent developments.

7) Finding support groups

Portal led me directly to the Crohn’s and Colitis Foundation of Canadian where I learned of a meeting of the group for information purposes; this meeting took place last night. It was very useful and I got to connect with a lot more people – I was surprised how much we all share the same symptoms.  Given my Portal experience, I was able to offer a lot of the questions and a different perspective. In the end, the doctor leading the discussion was so impressed that he put the web-page address on the white board because so many people wanted to know more!

8) Self discovery and reliance

It has been two months since my diagnosis and I have learned a great deal about managing my condition. Although I have not found the cure, I am much more comfortable in “my own skin”. I know when I am feeling well and when I begin to feel poorly. I then know to contact my physician sooner rather than wait for the symptoms to get worse – one thing I have learned is that very few things get better on their own! Further, I know when to jump in and help my doctor by giving her up to date and honest feedback about my current well-being. This openness and trust is the main reason I think why I am feeling better.

9) Managing expectations

It has been three months and I have grown to accept my chronic condition. I realize that I will have to take charge and be involved in every area of my health management. Ever since my first experience with the Portal site - I have become virtually addicted to it – I think I am on it two or three times everyday. Mostly, I am constantly in touch with a circle of about four patients with Crohn’s or colitis. One of us is really going through a bad time now and is facing her fourth surgery this year. I think we have been very supportive as she works through all of the issues. Her biggest one is her job – it wasn’t easy after the last surgery to go back to work and get her own job back … and then within two weeks, she started missing work again. Her husband left a couple of years ago and she is alone to cope with her illness and her kids – not to mention all of the financial worries. But I think we are helping her - one of our group knows a company in her area where she lives and they are trying to set up an interview for her where she can do some part-time work from home – isn’t that great! We are all coaching her on how to answer her interview questions!

In the end, I feel that I have learned so much about my illness and the role that I must play in its management. To this end, my doctor and I exchange communication through Portal where he posts my most recent test results. The Portal “get your results” section has software that makes it real easy for a doctor to upload my blood-work or even to see the diagnostic notes from my most recent CT scans. This has allowed me to even “trend” my results to see if things are getting better or worse. Ultimately, my involvement in my care is truly the only way to effectively maximize my health and live my life to its fullest! In short, I am not sure where I would be without it….

Within this story, the Portal had the following functionality:

It is anticipated that patient empowerment will lead to earlier recognition of problems and diagnosis affording faster and more effective treatment – leading to better overall health outcomes. In addition, it is hoped that this illustration will provide a forum for discussion on the many other, less tangible benefits from eHealth and Electronic Health Records. These benefits will come in many ways – some of which will be more measurable than others, but significant nonetheless!

Summary

The healthcare system, as a collective, must begin to build specific programs for 3C whereby they can more effectively access information and make sound health and medical care decisions. These programs – often referred to as chronic disease management or chronic care models (Morgan et al. 2007) – must become fully integrated within hospital environments such that patients can easily move freely so as to manage their quality of life while their health is good and to be able to respond effectively whenever their overall health begins to deteriorate, which is often the case with the chronically ill. This functionality will provide 3C with the ability to take advantage of their own knowledge and experience, resulting in a reduced need for services and increased cost savings. These savings will be due to the fact that the 3C, effectively “electronically resourced”, will not need as much time or as many visits with their physicians.

This paper concludes with a single, yet most important recommendation: the 3C must be recognized as powerful active participants with the ability to drive change and the adoption of eHealth tools. Opportunities must be provided to involve 3C in system design, testing and development.

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